2/6/10
February 6th, 2010
I’m all set for my appointment with Bioness on Wednesday. I may be here for awhile yet, or home by Friday, it all depends on how quickly my home care can get set up. I was supposed to have a home visit on Friday morning with an OT and PT, but Access/Handi Bus screwed up (no way!) by picking up the wrong person and taking them to my apartment building while we sat in the front entrance and waited. And waited. “Oh, he’ll be there any second”, they told me when I called. Standard answer. We only found out what happened because I overheard the lady on the phone at reception talking about my address and I intercepted “that’s where I was supposed to go!” So my home visit has been postponed to Monday (”we will book a wheelchair taxi and not take Access”), the transition lady who looks after setting up home care won’t be back to get the report until Wednesday, so the earliest I can go home is Friday. And considering my home care needs, I may need to wait a bit for a worker(s) to be available for the hours I need.
So I will still be here Wednesday, and the PT said she’d be interested in meeting with the guy, so I emailed him and told him it’s a go. I’m pretty excited. I also met with a rep from the orthotics place that made my AFO, so making an appointment to go there for a government funded Walk-Aide is my back up plan. But at least this guy is willing to come here and see me, so at least I’ll know if I even qualify for the product in the first place. The Bioness is a superior product, so my wish is that he decides I’m a good candidate to try it out on and get feedback from and gives me one for free!! Hee.
We lost Rick from our table yesterday. They took his name placard away and said “he won’t be coming back”. I guess he had a fall yesterday and is back in the hospital. Sigh. I went to visit Tom in his room earlier and met his wife. He is so weak, thin and sickly looking. I told him I was so worried about him because they replaced him at our table. He said “they’ve given up on me” and I said “no one has given up on you, so don’t you go giving up on yourself!” and his wife said, “did you hear that, Tom?” You can tell she’s scared. She made a comment about spending 58 years with him, and “looking forward to many more” as she kissed him lightly on the forehead. It was really sad. You can see that the Fight is gone from his eyes.
The new person at our table is another GIRL! Her name is Sandy but she’s not very talkative. She has a developmental disability and came from a group home where she fainted and fell. I am no longer the most talkative at our table, that role now goes to Garth. He is very talkative and loves to joke around. His room is across the pod from mine, so there is someone nearby to talk to. I met his granddaughters today, they are so cute.
Nick’s dad brought his camera in, so he is busy with that. Not a lot of exciting things to take pictures of here, you’d think, but a photographer’s eye will find things, and he is uploading his collection to Facebook. I’m not in there, thank God. I swear I would kill him lol I told him he should get a collection of the snoozing heads out by my pod’s TV.
Speaking of, Lawrence Welk is on out there, and everyone crowds around for that! ‘Cept us cool people.
This morning there was a meeting held by the MS Society and the MS Clinic about Dr. Zamboni’s research (and their own agenda, of course). I’ll say now that there were police with guns present, they kicked out the CTV News crew, they didn’t allow for a question/answer period (they only took questions in writing BEFORE their presentation, and chose which ones they would address), and will put “a portion” of the presentation on their website (I’m sure they will leave out the part where they tore into W5 and CTV for bringing this to our attention in the first place). Thank God for W5 and the internet, so we have been able to discuss and read more about it. Thank God for the doctors and vascular surgeons who are excited and looking into it, even if the neurologists and mostly pharmaceutical companies don’t want them to. They said it would be 5-7 years before any treatments would be available for MSers, should the research prove it is a viable action in the first place. I have every intention of being tested/treated before then! My dad spoke with a woman after the talk that had LOADS of info, she was really angry with the way things have been handled by the MS Society/Clinics so far. She told my dad to sit tight for a few months, Zamboni is touring the country and teaching his method to doctors, and there is a LOT of exciting news in the pipeline. She suggested I not go to Poland for treatment as they are using a method that Zamboni does not approve of and it’s not as safe. I see my neuro on Monday and although I don’t expect him to be very positive, I will ask to PLEASE put me on the list for any upcoming trials/studies. Apparently, as of January 23, CCSVI was considered an “official” disease, so I should be able to get tested/treated for it, no? We don’t have the proper equipment here to test for it, but it shouldn’t be long! I will be first in line.
I just spent the past two hours trying to upload a video to You Tube and now I give up. Kitty stuff will have to wait for another day!